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Immune Disorders Board Index
Pages: 1 Showing 1 - 20 of 23 for cvid support. (0.014 seconds)


CVID Support
May 22, 2017
... Fellow Zebras? Anyone out there with CVID? (Common Variable Immune Deficiency) I just had my 3rd treatment and it would be nice to chat with people going through the same thing. (2 replies)
... Hi kelli..... Thanks very much for you note. It is so nice to hear from people that " get it"! My son already has an iep for other unrelated issues....so we could amend this document if we need to. His school has been very supportive and anxious to help in any way. So far so good. The ivig went great....so I'm thinking that we'll stick with that for now especially... (5 replies)
... Lastly, YOU ARE NOT ALONE! We have a wonderful CVID support group. Feel free to pm me and I can give you the info. Good luck, deep breath... ... (5 replies)

CVID support......
Nov 24, 2006
... I am a female 58 years old and was diagnosed 4 years ago. I have done a lot of research on the subject of CVID sinced diagnosed. I was surprised that your husband's doctors attribute his CVID to his military experience. ... (6 replies)
CVID support......
Sep 10, 2004
... Tim just retired from the US Navy and they attribute his CVID to Gulf War Syndrome. His problems began with sinus inf's and pneumonia but progressed to GI disorders, fevers, edema, hearing loss and tinnitus, etc. ... (6 replies)
CVID support......
Aug 26, 2004
... ts, but here in the US, it's not very common at all. In fact, my doc at Mayo just started using it and has only about five or so people on it, and she only sees CVID patients. ... (6 replies)
CVID support......
Aug 24, 2004
... hi, i'm mooncrone and i am 51 years old and have CVID for many years. ... (6 replies)
CVID support......
Aug 15, 2004
... Anyway, there aren't a lot of people out there I can find with these disorders and I was just hoping to get some support and find others who know what it's like. ... (6 replies)
CVID Support
Sep 6, 2017
... My fatigue just keeps getting worse. If I'm not on antibiotics, I get respiratory infections, so I don't think the IVIG is working yet after six treatments. And now I am getting the pain as well, in all my joints and some tingling/numbness going on with my fingers. I don't know what that is from. I don't have the best doctors. I have other autoimmune issues as well,... (2 replies)
CVID Support
Sep 6, 2017
... Canadian Zebra here.... I use Hizentra & have for 4 years. I supposedly have fibromyalgia as well - although docs keep telling me I have some sort of autoimmune as well but my bloodwork is not currently supporting it. The Hizentra seems to keep infections at bay, at least I don't get really sick or pneumonias anymore (*cross fingers*). My pain and fatigue are my major... (2 replies)
... My younger daughter, a psychologist, has been trying forever to get me into therapy OR a site like this. There are no support groups in my area so I started searching for this type of support. Not ready to do therapy... ... (9 replies)
... Yes as have I. I developed arthritis at 37 literally OVERNIGHT. Woke up and couldn't close my hands. Then came the deadly lung disease caused by CVID. Now, I have granulomas too numerous to count in my abdomen and have to meet with a surgeon next week to discuss a biopsy. So, trust me, I GET it. I am only 40 with an 8 year old daughter a full time job and NO local... (9 replies)
Cvid
Mar 22, 2012
... this CVID is definitely under diagnosed. They don't test for it because the treatment is so expensive. They'd rather constantly give antibiotics. ... (8 replies)
Cvid
Mar 22, 2012
... Thanks for the reply. I get the sinus pain about 1 to 2 days after. But I have been upper respiratory sick for almost two months straight. That's totally new. The doc's think that I've had this my whole life but did a job compensating with other immune systems. It was a fluke find. I had chronic stomach ulcers for 2+ years. They kept testing for h pylori, insisting I was... (8 replies)
Cvid
Mar 22, 2012
... ven though you're getting IVIg but it should be infrequent. Your dose will be titrated according to your response and infections. You've probably had undiagnosed CVID for a long time but were asymptomatic until now. I was diagnosed with hypogammaglobulinemia 5 years before I became symptomatic. ... (8 replies)
Cvid
Mar 13, 2012
... Thanks for the response. You definitely have a much more positive attitude than I do! I think finding a support group is a good idea and will start looking into it. ... (8 replies)
Cvid
Mar 13, 2012
... I have CVID and have developed a rare and potentially deadly lung disease from it. I live a very normal life, work full time, single mom, own my own home. ... (8 replies)
... Feel free to private message me if you would like pics of the needles. We also have a fabulous support group too if you are interested. We even have some parents of cvid kids on there. Good luck. ... (5 replies)
... Gosh - I wish you lived down the street and I could run over for a cup of coffee! Thank you. Thank you so much. I can not believe how much it helps just to talk/write to another person about this - not a doctor or nurse. Sounds like we have a fairly similar personality type - which helps as well. I have never wanted to get involved in any kind of support group or "blog" thing... (91 replies)
Cvid
Sep 27, 2007
... i am responding to newbe who posted 12/06- if you are still out there please respond - the fatique is really the worst- i am on subq 3x weekly -2 hours each treatment- there seems to be no rhyme or reason as to why some days are awlful and others ok- like you i look healthy and so few people have cvid they do no understand the tiredness and i have not gotten an answer from the... (19 replies)


Associated Tags: cvid, iga, igg, immune deficiency, ivig

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